“All too often, family, friends, colleagues — even one’s doctor — don’t understand what afib is like, what it’s like to have an afib attack, or how hard it is to find the right treatment options,” says Steve S. Ryan, PhD, an advocate for people with atrial fibrillation and founder of A-Fib.com, a patient resource Web site.

Joining a support group made up of people who also have atrial fibrillation can yield backing and understanding from those who can relate to what you're experiencing.

Although not a substitute for medical advice, support groups can be a place where you turn for emotional support. You'll learn about treatments that have worked for others, and gain a sense of hope that you can find relief from your atrial fibrillation symptoms.

Finding a Atrial Fibrillation Support Group

Local support groups for atrial fibrillation patients are found in many communities, notes Kevin R. Campbell, MD, an assistant professor of medicine in the division of cardiology at the University of North Carolina at Chapel Hill. “A good source of information for these groups is often your local cardiologist, or the Web site www.stopAfib.org,” he says.

Dr. Ryan adds that online support groups are often practical options for people who do not have access to local groups or who prefer to seek support from the comfort of home. Online groups also offer more anonymity than face-to-face meetings. Some people, he says, actually prefer online communities because they find them even more personal.

Online support has been the answer for Jenni Russell, 64, who was diagnosed with atrial fibrillation in October of 2012. She found the assault of symptoms, battery of tests, and failed treatments tiring. In an effort to reach out to others who could relate to what she was going through, she turned to the Web in search of support groups, and a Facebook search of atrial fibrillation led to her current afib support group.

“I would be lost without it,” says Russell, who's from Gillingham, in Kent, England. “The other members are helpful and supportive because we are all going through the same thing.”

Joining a Patient Support Group

Once Russell discovered and joined the support group, she began visiting the page daily to keep up with current posts, getting to know others in the group. Members post comments about managing their symptoms, ask questions about treatments, and talk about everyday happenings, creating a sense of familiarity and camaraderie in the online community.

People who have lived with afib for many years share firsthand, have lived knowledge, explains Ryan. They aren’t doctors, but they can offer support and advice from a been-there/done-that perspective.

“I have learned a lot from the members that have lived with afib longer than I have,” Russell says. “I'm still a newbie. There's always someone there being helpful and supportive. We are never made to feel that we are panicking over nothing. Their advice and support are invaluable.”

Perhaps most importantly though, the group offers something others can't. “Yes, we have friends and family to lean on and talk to,” Russell explains, “but they don't understand like the group does.”

More Benefits of Support

Atrial fibrillation has been linked to depression and anxiety in people living with the heart condition. An April 2013 study in the journal Cardiovascular Psychiatry and Neurology identified depression and anxiety as factors that affect how people perceive their condition and how they approach treatment. Implementing strategies to reduce anxiety and depression may help to improve treatment outcomes as well as people's quality of life, the study concluded.

That's where support groups come in.

“Sometimes just listening and understanding is all a person needs to know that they’re not alone in dealing with afib,” Ryan says. Knowing you aren’t alone can go a long way in helping with the depression commonly associated with atrial fibrillation.

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